Woman Overcomes Rare Disease To Compete In Ironman

Emilie Nickoloff Hopes To Raise Awareness About Stevens-Johnson Syndrome

Running on the Cherry Creek Trail, Emilie Nickoloff and her husband, David, are training for the race of their lives, an Ironman triathlon.

The Ironman is a "2.4 mile swim, 112 mile bike ride, and then a marathon, 26.2 miles," Nickoloff said.

She's in the best physical condition of her life. It's a stark contrast to four years ago when Nickoloff was admitted to the University of Colorado Hospital burn unit with a rare and potentially lethal disease.

"I had a fever of 104 and finally, we decided it was time to go to the hospital," Nickoloff said. "We noticed there was a rash forming on my arms. It started to spread all over my torso."

She was diagnosed with Stevens-Johnson syndrome.

"It's an autoimmune reaction," said Dr. Gordon Lindberg, medical director of the University of Colorado Hospital burn unit. "You take a medication, and for reasons that we don't understand completely, the body forms an allergic reaction to the skin, and the skin sloughs off."

The reaction also affects the mucous membranes, especially in the mouth, nose and eyes. In severe cases, patients can lose their vision. Nickoloff's vision was saved through cutting-edge amniotic membrane transplants.

"I woke up from a coma blind, and it took about a month to get my sight back. So people were telling me that I had burns all over my body, but I didn't know what that meant," Nickoloff said.

Lindberg said Stevens-Johnson syndrome patients are put into a medically induced coma so they don't feel the extreme pain of bandage changes and wound care. The UCH burn unit treats SJS patients from a five-state region. Still, it only treats between 15 and 20 cases each year. The rare nature of the disease left Nickoloff feeling isolated.

"I was trying to reach out to people, but there really wasn't anyone to reach out to," she said.

Now, having made a full recovery, Nickoloff is volunteering to share her experience with other SJS patients in treatment.

"I'll be talking with them and explaining my experiences and what it was like to come home and start the long recovery process," Nickoloff said.

She is also supporting SJS patients by raising money and awareness for the disease by competing in the Ironman triathlon; all the while, she is choosing not to dwell on the possibility of another reaction. In her case, doctors are unable to identify the cause of her reaction.

"A medication is out there that could kill me, potentially, and I don't know what it is," Nickoloff said. "But instead of being inhibited by that fact, I can still go out and accomplish great things everyday, and I hope that other people with Stevens-Johnson syndrome can take kind of a fearless approach to moving forward after the disease."

To learn more about Nickoloff's story or to track her Ironman training, read her blog.

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